Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Help Needed! AS Newbie

Hello AS-Kickers,

My Dad - currently age 60 was diagnosed with AS in 2021. I found this website this year and I have been reading a whole lot. I am trying my best to help him and need some of your help. If you can, please read through my entire post. Our questions are at the bottom...

The main issue is that he lost a significant amount of weight and muscle due to inactivity and diet, which we believe is the main reason he has declined. I also have doubts about whether he actually has ankylosing spondylitis (AS), since his symptoms don’t align with the typical AS pattern (at least what I’ve read). For instance, starch doesn’t seem to trigger flare-ups, but other things (which are known to the general population to be inflammatory) like sugar, fast food, and low-quality meats (we live in the U.S.) appear to flare him up. He doesn’t have any IBS or UTI symptoms, upset stomach, etc…

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Info:
Lives in the U.S
Age 60 Male
Asian Decent
NSAID usage on & off - last 3 years
Tried different diets
Active lifestyle before early 50s
Occupation - mechanic & engineer
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Injuries:

Age 14 - Hurt his right knee playing soccer, knee was swollen for 2 years before finally healed.
Age 18 - Hurt his right shoulder throwing football, hurt for 2 years
Age 25 - Hurt his lower back doing manual labor (overuse injury), healed relatively quick with PT (6 months)
Age 42 - Hit his left knee while working, swollen for 2 years before recovering
Age 54 - Hurt his right knee (from overworking). Went 1 year to rehab, then had microscopic knee surgery, 1 month after surgery rheumatologist then diagnosed him with AS, and prescribed NSAID pills which helped with swelling. In total, his right knee was swollen and hurt for 4 years, before back to normal

All joint injuries took much longer (4x-5x longer) to recover than his Doctor’s expected.
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What happened:

After his knee injury at age 54, he became much less active as it was hard for him to walk with a swollen knee. When his knee was really bothering him, he sometimes laid on the couch for a couple of weeks at a time. This caused him to lose most of his right leg muscle, along with no longer exercising.

At age 56, after his knee had not gotten better, his doctor realized that he must have some other issue, because his injury- an overuse injury should have healed in 3-4 months. This is when he got some blood work done and he tested positive for HLA-B27, and was diagnosed with Ankylosing Spondylitis.

Around this time he also got the Covid booster shot, and his knee got worse.
In 2021, his rheumatologist prescribed him with a NSAID called Etodolac at 400mg twice a day. With a healthy diet (not LSD or NSD), he is able to not take his pills sometimes for a couple of weeks, sometimes only 2-3 pills a week, and when he is doing really bad- he has to take them once or twice a day.

My Dad’s weight when he was fit was 130lbs. Over the last 4 years he has lost most of his right leg muscle, back muscles and shoulder muscles, and is down to 115 lbs.
His right knee has recovered back to normal, but now he has some other issues that we think are caused by lack of muscle.
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Current Issues:


Constant:

Right ankle joint is swollen and he has had plantar fasciitis for the last 6 months.

A lot of muscle pain starting from the right groin radiating down through the inner right quad. After sitting down, it hurts a lot when he stands up and straightens his leg. After walking it loosens up and feels better, but if he walks too much it starts to hurt again. Started happening about 2 years ago, and he would get better after a week - like an injury. Originally it would require him to get it from overworking. Recently he has been getting it a lot more often and it is now very easy for him to get it (example: doing everyday tasks, like unpacking groceries). He has had it now for 3 weeks.



Once in a while:

Muscle pain in the right buttocks area

Muscle pain in the neck and jaw

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Diet affects


Top triggers for joint inflammation - sugar, restaurant food, most meat (except seafood) from the supermarket.

We buy most of our meat from a family farm now…

We did strict paleo twice this year for about 3 weeks at a time, and it really seemed to help.

When he goes on a week-long cruise for vacation, he eats a little bit of everything (except junk food) and he feels much better.
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Other Symptoms - Possibly related?


“Internal Rash” - My dad has been getting this for about 15 years, it only happens in cold winter weather. He has a burning/itching sensation around his stomach, middle of lower back, and upper back. Doctors don’t know what it is. No visible rash or anything on skin, it feels like it's coming from the inside. It has been getting worse recently, happening more frequently and spreading to other areas (originally only happened around his stomach). Alleviated with daily use of Aveeno lotion

Sometimes his lower-middle back is slightly darker like there is a mild bruise. He says that the area doesn’t hurt him or anything.



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Where we need help & answers / Our Questions




We would appreciate responses and advice from anyone reading!

I would love to put him on a weekend fast and no-starch diet for a while to see how he responds. The only problem is he is already underweight and he doesn’t want to do it (which I agree with, given the circumstances). Since sugar and processed foods affect him, it’s really hard to get calories in without starch. We are unsure if dairy affects him, we’ve recently added back in probiotic yogurt, A2 milk, and hard cheese - haven’t really seen much to conclude…

1. We are confused if the muscle pain (which sometimes feels like a pinched nerve), has anything to do with Ankylosing Spondylitis, or is simply just because he has very little bit of right leg muscle.

2. We would love to know if you guys think he has Ankylosing Spondylitis. Aside from injuries that took way too long to heal, he has lived a normal life for most of his years. I would like to think his current right leg muscle pain and swollen right ankle has to do with him walking funny from when his right knee was swollen and because he lost his muscle… We do not trust his rheumatologist, that guy just wants to put him on meds.

3. My dad has to use a cane to walk right now. He wants to start taking his NSAID pill daily for a couple of months so he can work out and eat more things, in order to put back on muscle. What are your guys' thoughts? Is taking 400 mg NSAID (Etadolac) everyday for 2 months going to have any bad effects? I kind of think at this point he is right, and should do this. He is already taking Bromelain, Turmeric and a handful of other natural pills…. Is there anything that can do the same job as a NSAID that is healthier?

4. What type of test do we need to do in order to see if he has klebsiella pneumoniae or SIBO in his gut, and to get antibiotics?

5. I have read many stories here about NSD success. Do most people who do all the right steps go into remission for the rest of their lives, or is the remission for only a couple of years?

6. He has no symptoms of SIBO, what is the most important path to success? Getting rid of SIBO, healing the gut, or killing of the klebs? I would want to possibly try and kill the klebsiella pneumoniae with antibiotics, and go back on strict paleo (with carbs though) to heal the gut (leaky gut is what I initially read causes autoimmune diseases..)

7. Are nightshades bad for everyone's gut, or just people with certain sensitivities?

8. Since he is eating starch for now (potatoes, white rice, bananas, cassavas, yams, plantains). Are there any foods we should avoid that make consumed starch more potent?

9. If sugary foods affect him - like deserts. Is it possible for the sugar from fruits and honey to also affect him? Fruits and honey are a part of his daily diet.

10. Are there any downsides of eating more probiotic foods, or a diet low in salt?

11. Sometimes when he has a bad meal, he can tell within an hour that the food was no good. His current swollen joints will feel worse, and other joints such as his fingers and jaw will start to temporarily hurt. Is this normal?





Thanks guys for reading, whatever help, insight, and recommendations you can provide will be much appreciated. The last number of years have been hard on us, and I’m determined to do everything I can. I’m sure I will be posting more questions and updates here as time goes on

WELCOME, GratefulOne:



1. We are confused if the muscle pain (which sometimes feels like a pinched nerve), has anything to do with Ankylosing Spondylitis, or is simply just because he has very little bit of right leg muscle.

#The apparent muscle pain has EVERYTHING to do with AS. B27 positive and slow healing injuries along with diverse symptoms SCREAMS AS!

2. We would love to know if you guys think he has Ankylosing Spondylitis. Aside from injuries that took way too long to heal, he has lived a normal life for most of his years. I would like to think his current right leg muscle pain and swollen right ankle has to do with him walking funny from when his right knee was swollen and because he lost his muscle… We do not trust his rheumatologist, that guy just wants to put him on meds.

#The rheumatologist properly diagnosed Your father, but he lacks some of the understanding required to treat this disease most effectively. They want the patient to FAIL on NSAIDs before providing biologics.

3. My dad has to use a cane to walk right now. He wants to start taking his NSAID pill daily for a couple of months so he can work out and eat more things, in order to put back on muscle. What are your guys' thoughts? Is taking 400 mg NSAID (Etadolac) everyday for 2 months going to have any bad effects? I kind of think at this point he is right, and should do this. He is already taking Bromelain, Turmeric and a handful of other natural pills…. Is there anything that can do the same job as a NSAID that is healthier?

#I regret very much my own use of similar NSAIDs!! They (non-selective) greatly accelerated my disease, but Your father is much older than I was. Taking this drug is a very individual choice. However, I recommend trying diet plus proper supplementation: From experience VitD 5000 IU, VitC 2000mg, EVOliveOil 12-18 teaspoonfuls daily especially 4 before each meal. To help eliminate inflammation take 6-8 capsules of BORAGE SEED OIL immediately before bed. NO TURMERIC; it is STARCHY. AVOID starches and please understand that this is a statistical thing: A person with AS will not flare every time they eat a starch, but the cumulative risk will guarantee that AS never goes away! Fasting is the best and safest way to take down a flare. Please use the forum to check out SAFE foods upon returning to foods--4-6 day water-only fast required (losing a maximum of 2 pounds overall; neglecting tract contents which will reestablish rapidly). I recommend KIRKLAND Extra Strength Muscle and Back Pain Relief: Acetaminophen 500mg/Methocarbamol 400mg. Should be over counter please heed all warnings; it's available at Costco Canada and via eBay.

4. What type of test do we need to do in order to see if he has klebsiella pneumoniae or SIBO in his gut, and to get antibiotics?

#Klebsiella tests are completely unreliable and should never be used FOR ANY PURPOSE. SIBO CAN be tested using methane ratiometric tests, but it is time-consuming and not very useful. I cannot recommend these tests AT ALL.

5. I have read many stories here about NSD success. Do most people who do all the right steps go into remission for the rest of their lives, or is the remission for only a couple of years?

#I have followed many people using NSD and as long as they stay on the diet they do just fine. Sometimes they stray, but willing to pay the consequences then and the point is--THEY KNOW EXACTLY how to get out of the AS club again!.

6. He has no symptoms of SIBO, what is the most important path to success? Getting rid of SIBO, healing the gut, or killing of the klebs? I would want to possibly try and kill the klebsiella pneumoniae with antibiotics, and go back on strict paleo (with carbs though) to heal the gut (leaky gut is what I initially read causes autoimmune diseases..)

#I will include my protocol here. I was on antibiotics combined with mostly strict diet for six years and now I am unable to trigger a flare, despite being off antibiotics for over a decade. He can get Plaquenil, which I did when our governor banned it during the plandemic! It is hydroxychloroquine HCQ.

7. Are nightshades bad for everyone's gut, or just people with certain sensitivities?

#Just people sensitive to lectins. I was surprised to learn that I do not have a problem with nightshades OR gluten.

8. Since he is eating starch for now (potatoes, white rice, bananas, cassavas, yams, plantains). Are there any foods we should avoid that make consumed starch more potent?

#AVOID ALL FRIED FOODS, ALL DENATURED (over-heated) OILS.

9. If sugary foods affect him - like deserts. Is it possible for the sugar from fruits and honey to also affect him? Fruits and honey are a part of his daily diet.

#SUGARS should NOT cause problems unless SIBO is extreme. How long after consuming sugar does it take before he feels a flare-up?

10. Are there any downsides of eating more probiotic foods, or a diet low in salt?

#PROBIOTICS contain starchy substrates that promote the growth of ALL bacteria--good and bad. Low salt diets can result in dehydration and lowered stomach acid which is required to destroy pathogens.

11. Sometimes when he has a bad meal, he can tell within an hour that the food was no good. His current swollen joints will feel worse, and other joints such as his fingers and jaw will start to temporarily hurt. Is this normal?

#In my OPINION, he has severe SIBO; the reaction is so quick that it is probable that the germ is established throughout the entire alimentary tract! Even SUGAR will produce inflammation in this situation.


I can only suggest following DIET more strictly and I will include more information on antibiotics, but I would like to have Your rfather enlist the help of a ROAD BACK FOUNDATION physician based--IF POSSIBLE--upon my own experiences.
https://www.dropbox.com/s/mh3lrsm8208glge/ASonlineGUIDE1112.pdf


Thank You for caring for one of our own!

HEALTH,

John

Dear DragonSlayer,

I just want to start by saying a huge thank you for all the information you’ve shared. It truly means so much to me, and I can’t express enough how much I value the time and energy you’ve put into helping me—and so many others—on this forum. Knowing there’s someone like you I can turn to for advice brings me a real sense of relief.

Thanks to your confirmation that my dad has AS and SIBO, I now feel confident in narrowing down the right path to help him heal. I’m going to buy all the supplements you recommended today and will follow the daily intake you suggested.


I also saw some forum members mention that LDN could be a good alternative to NSAIDs without the bad side effects. Do you have any experience with that? We’re planning to try to get him off the NSAID this week. Out of curiosity, do you think taking 400mg NSAID 2-3 times a week is enough to cause damage or accelerate the disease in any way?

We live in Florida, and I’ll be looking into getting a prescription for Plaquenil this month as well.
Regarding your reply about sugar: "SUGARS should NOT cause problems unless SIBO is extreme," I wanted to clarify that my dad usually feels a flare-up anywhere from 10 minutes to a couple of hours after consuming sugar.

In addition to being stricter with starch intake, do you also think he should eat a "LOWFOD Map" diet for the SIBO?

Aside from sugar, my Dad's biggest trigger food is the low quality meat. This could be anything from processed deli meat, salami, grocery store bacon, frozen meat (like jimmy deans sausages), any meat from stores like Costco. Have you ever seen anything like this before for Autoimmune Disease? I was thinking the Omega 6 ratio was just to high... He can also flare up from this in 10 minutes to a couple of hours..

This is probably worth mentioning, though I’m not sure if it’s related: my dad has always had a strong aversion to onions. The smell of raw onions makes him nauseous, and eating them raw gives him a big stomach ache. He can tolerate sautéed onions in small amounts, they don’t seem to trigger a flare, just make him feel sick.

Following your advice to avoid turmeric supplements due to their starch content, are there any other spices that might be high in starch? We love to cook Mexican, Indian, Asian and Italian food. While some of our Indian dishes contain turmeric, the rest are free of it, though they do have other spices.

I went through some of the papers you linked, I was particularly looking at the “London AS Diet". I also ordered Carol Sinclair’s book, which seems to be highly recommended on the forum for recipes, and it should arrive next week.

For clarification: Is it possible to improve and heal on a low-starch diet, or is a no-starch diet the only way to go?

There’s so much information out there, and people are doing different things. What exactly constitutes a low-starch diet for AS, in your experience? If we cut down his starch intake to just one serving of white rice or potato per day, is that still considered within the guidelines of a low-starch diet? Are ripe bananas okay on the no-starch diet? I’ve read that cashews and peanuts should be avoided, but are there any other nuts that should also be excluded? And when it comes to dairy: I know soft cheeses and large amounts of dairy are bad for SIBO, but do you think hard cheeses or probiotic yogurt might be okay?


I realize that I have a lot of questions, and I apologize if it seems like too much. We’re totally new to this whole world of SIBO, AS, and autoimmune diets, and I have to admit, it’s a bit overwhelming, and we are very uneducated on this topic. I’ve been reading so much over the past few days, but with so many different pieces of information and experiences out there, it’s hard to know exactly what to do.

I’ll be taking your guidance to heart and following your advice closely. You’ve had so much success, and I trust you—along with a few others who seem to have had similar results—to steer us in the right direction. I really appreciate your support.

Oh, I almost forgot. Yes, I will look into enlisting him with a Road Back Foundation Physician. I will let you know when I get in contact with them…

Thanks a Million,

Jonathan and James

Hello, Jonathan and James!
Thank You, for Your kind words of encouragement.

Thanks to your confirmation that my dad has AS and SIBO, I now feel confident in narrowing down the right path to help him heal. I’m going to buy all the supplements you recommended today and will follow the daily intake you suggested.

I also saw some forum members mention that LDN could be a good alternative to NSAIDs without the bad side effects. Do you have any experience with that? We’re planning to try to get him off the NSAID this week. Out of curiosity, do you think taking 400mg NSAID 2-3 times a week is enough to cause damage or accelerate the disease in any way?

##NSAIDs: Regret that ANY LEVEL of this specific drug can be dangerous. If I were treating a family member in distress, I would rather begin with a prednisone taper during which time I would eliminate all sources of starch from the diet. Then LDN is a possibility; I don't have any experience with it in AS, but my wife has been taking it for her RA with not enough success for strong recommendation.

We live in Florida, and I’ll be looking into getting a prescription for Plaquenil this month as well.
Regarding your reply about sugar: "SUGARS should NOT cause problems unless SIBO is extreme," I wanted to clarify that my dad usually feels a flare-up anywhere from 10 minutes to a couple of hours after consuming sugar.

##That is an amazingly short time. There are MYRIAD things going on with the diet challenges in AS: SUGAR can 1) directly feed Klebsiella pneumoniae and increased numbers will trigger the immune system even more. 2) will cause and expand CANDIDIASIS, the fungus that is a major cause of "leaky gut," and a constellation of associated symptoms especially chronic fatigue, dyspepsia, rashes, headaches, muscle weakness--everything that blurs AS symptoms also!

In addition to being stricter with starch intake, do you also think he should eat a "LOWFOD Map" diet for the SIBO?

##I am not familiar with this diet, however, anything that helps eliminate SIBO sounds great; please check out Dr. William Davis. His recommendations include yoghurt, but the starter supplements can be taken directly: L. gasseri and L. Reuteri, also Bacillus coagulans
Aside from sugar, my Dad's biggest trigger food is the low quality meat. This could be anything from processed deli meat, salami, grocery store bacon, frozen meat (like jimmy deans sausages), any meat from stores like Costco. Have you ever seen anything like this before for Autoimmune Disease? I was thinking the Omega 6 ratio was just to high... He can also flare up from this in 10 minutes to a couple of hours..
##Some processed meats contain starchy binders. Avoid also caramel and other additives that promote Kp growth

This is probably worth mentioning, though I’m not sure if it’s related: my dad has always had a strong aversion to onions. The smell of raw onions makes him nauseous, and eating them raw gives him a big stomach ache. He can tolerate sautéed onions in small amounts, they don’t seem to trigger a flare, just make him feel sick.

##I don't understand; onions seem to be recommended in parasite control. I have never had trouble with onions.
Following your advice to avoid turmeric supplements due to their starch content, are there any other spices that might be high in starch? We love to cook Mexican, Indian, Asian and Italian food. While some of our Indian dishes contain turmeric, the rest are free of it, though they do have other spices.
##I love Indian food but gave it up along with Mexican food during the time I spent treating my AS with a combination of antibiotics and diet. MANY herbs and spices are too starchy and it is important to test everything: Per Carol Sinclair's book The IBS Low-Starch Diet use iodine to test for the presence of starch. This is especially useful for determining whether certain fruits were harvested too early (exclude: Pineapple, grapes, melons, citrus note avoid the pulp, lychee).

I went through some of the papers you linked, I was particularly looking at the “London AS Diet". I also ordered Carol Sinclair’s book, which seems to be highly recommended on the forum for recipes, and it should arrive next week.
For clarification: Is it possible to improve and heal on a low-starch diet, or is a no-starch diet the only way to go?

##Many people can get by using London AS DIet (LSD) in combination with sulfasalazine (EN), but it is not aggressive enough in the presence of SIBO, in my opinion. It would be better to go stricter at first then try reintroducing foods later.

There’s so much information out there, and people are doing different things. What exactly constitutes a low-starch diet for AS, in your experience? If we cut down his starch intake to just one serving of white rice or potato per day, is that still considered within the guidelines of a low-starch diet?

##ABSOLUTELY NOT--It is impossible to conquer AS while eating this much starch: My advice is to GO ALL THE WAY or don't frustrate Yourself by doing half the work required! At age 60, there are enough good years left to make a solid effort for a few years really pay off in retirement!

##Are ripe bananas okay on the no-starch diet? Ripened to nearly fully black, perhaps Ok
I’ve read that cashews and peanuts should be avoided, but are there any other nuts that should also be excluded?

##I think that most of the nuts commercially available are safe except the two You have mentioned. Almonds, walnuts, filberts, macadamias, Brazil, pecans, etc are all good to go.

And when it comes to dairy: I know soft cheeses and large amounts of dairy are bad for SIBO, but do you think hard cheeses or probiotic yogurt might be okay?

##Hard (aged) cheeses are not bad in small quantities. The problem with soft cheeses like mozzarella is that some people (myself especially) can mistake them for a MEAL instead of a CONDIMENT. YOGHURTS are potentially very dangerous except in small quantities. I was taking 2oz every other day of Stonyfield Farms after I stopped taking antibiotics. I did not have a problem at that rate but otherwise still very strict diet.

I realize that I have a lot of questions, and I apologize if it seems like too much. We’re totally new to this whole world of SIBO, AS, and autoimmune diets, and I have to admit, it’s a bit overwhelming, and we are very uneducated on this topic. I’ve been reading so much over the past few days, but with so many different pieces of information and experiences out there, it’s hard to know exactly what to do.

##Regret my terse answers, I am traveling today and for next few--long flights to Philippines

I’ll be taking your guidance to heart and following your advice closely. You’ve had so much success, and I trust you—along with a few others who seem to have had similar results—to steer us in the right direction. I really appreciate your support.

##I appreciate Your faith in me, but I am only human and NOT a doctor--I hope Your father can, like me, become an EX-patient!
Oh, I almost forgot. Yes, I will look into enlisting him with a Road Back Foundation Physician. I will let you know when I get in contact with them…

##Excellent! Please take my protocol (available from Dropbox link in my signature) to the RBF physician.

##Please keep us informed as to his progress

HEALTH,
John

Hello John and Fellow Readers,

John- how was your flight to the Philippines, and how did your trip go this past week?

Update of the past week:


We’ve transitioned my dad from a Paleo diet—where he was eating one meal a day with white rice or potatoes—to an LSD (Low-Starch Diet), as recommended by the community. To his surprise, it worked like magic! After just one day on the LSD, he noticed significant improvement, and by day two, he felt even better. At that point, he was still taking 400mg of his NSAID daily. Now, on day 5 of the diet, his pain has leveled out. He’s begun tapering off the NSAIDs and is currently down to 200mg per day.

I just bought him some Curcumin extract capsules, and we are going to try and replace the NSAID with it… So far, most of his joint pain has improved significantly—his neck and lower back feel great. He mentioned his neck was a bit stiff today, but he’d been resting quite a bit and wasn’t very active.

He still has plantar fasciitis, not really sure how long that will take to heal. His leg muscle is more relaxed now, his groin muscle still hurts if he were to lift his leg as if he was going to walk up a set of stairs.

We’ve been following the supplement suggestions Dragonslayer provided, including Vitamin C and Vitamin D. He’s tried the EVOO and Borage oil but has been inconsistent with them due to stomach discomfort. He’s noticed that the oils run and upset his stomach, so we’re adjusting the dosage and frequency.

Overall, things are progressing in the right direction. The book by Carol Sinclair arrived, and he’s been reading it to better understand the approach. After seeing a reduction in pain and symptoms, he’s fully on board with the LSD/NSD diet.

That said, the diet has been an adjustment for him—he’s felt more tired than usual and has had occasional headaches since switching.

Some New Questions for Clarity:


1. EVOO and Borage Oil: What exactly is their purpose? Are they meant to support the digestive system or reduce inflammation in other ways?

2. Are AS symptoms active when there are klebs in the gut? Or are AS symptoms active when the kleb bacteria travels outside of the gut into blood steam, and the immune system responds? If the latter is true, is it theoretically possible to put AS into remission by not necessarily killing off all the klebs, but healing and repairing the gut lining so the klebs and other toxins cannot go through the gut lining into the bloodstream?

3. Plaquenil (Hydroxychloroquine): When you mentioned Plaquenil, were you suggesting it as a way to alter the gut microbiome, or did you mean to use it as a DMARD to suppress the immune system?

4. Lactose vs. Starch: I came across a claim suggesting lactose is 50% as potent as starch in feeding Klebsiella bacteria. Is there any truth to this? For example, would 10g of starch be equivalent to 5g of lactose in terms of feeding Klebsiella?

5. In your last reply, you mentioned that sugar can directly feed the klebs. I’m a little confused, in your first reply you said that a sensitivity to sugar indicates SIBO, which causes inflammation.

-What does SIBO have to do with affecting AS, and the klebs?

-If sugar directly feeds the klebs, why are there so many posts on the forum about making and eating desserts? How and why does sugar feed the klebs, is there a certain scenario?

-When I said earlier that sugar affects my dad, I meant if he were to have soda, pastries, cakes, etc. We have never tried to take fruits out of his diet in the past. He eats a bowl of berries, a banana, an apple, and another bowl of random fruit everyday. From what you’ve seen, are sugary fruits generally safe as long as the starch content is low? Does fruits not have an affect on SIBO the way processed-sugar does? Do you think natural fruit juices without added sugar should be ok, like cranberry and tart cherry juice?

6. LSD/NSD and Rapid Pain Relief: We saw a quick reduction in pain after switching to the LSD/NSD diet. Do AS symptoms roar when there are a lot of klebs present, or is it when the klebs multiply/grow. Shouldn’t the majority of Klebsiella bacteria still be present, meaning the pain shouldn’t improve so quickly?

7. Current Diet: How does your current diet look now? Do you still stick to LSD/NSD most of the time? Did you fully achieve remission before reintroducing other food groups, or did you add them back gradually?

Next steps for us:

I bought the Lactobacillus probiotics that you mentioned. I know that in terms of antibiotics and antimicrobials, you want to cycle between different types - so that a “super resistant strain of bacteria” isn’t created throughout the process.

8. Is it fine to keep taking the same probiotic strains for a long period of time, or should probiotics be cycled too?

Future Plans:

Will post another update in a couple of weeks.

The information on this site is incredible, and I’ve been writing down everything I’ve been learning. Maybe my many questions can be a help to others in the future!

Best Regards,

Jonathan & James

Hello, Jonathan & James

Flight was good Thank You--still a bit jet lagged.

Very nice to hear about the improvements going LOW starch; it is the right answer, certainly!

I suffered with plantar fasciitis for over a year before I got frustrated enough to try beating them to death! It worked and they have been too scared to return in over 25 years! It will take some time for the rest to settle down; there is no anti-inflammatory diet better than fasting. Under optimum conditions (my AP combined with NSD/LSD), I was still improving after over a year; finding new pain-free areas and ROM issues decreasing. I don't know what the curcumin will do...I hope he can eliminate the intestine-damaging NSAIDs!

Excellent to follow Carol's book closely; pure WISDOM!

I've never had any problems when taking EVOO by the teaspoonful throughout the day and borage seed oil in quantity before bed, but everyone reacts differently and it is good to find what is not too uncomfortable.
The main battle is won: He's a believer!

1. EVOO and Borage Oil: What exactly is their purpose? Are they meant to support the digestive system or reduce inflammation in other ways?

##EVOO is naturally anti-inflammatory with the advantage of helping heal and seal the gut. GLA in borage seed oil is a very powerful anti-oxidant that will have strong anti-inflammatory action, also. Dr. Mercola says borage seed oil alone can eliminate the need for NSAIDs. It always worked for me, but only in large quantities (5-8g).

This diet is very difficult to adjust to because of the sudden elimination of carbohydrates. It will take over two months to go from carbohydrate-burning for energy to burning fats and proteins for the same level as carb fuel. This is another feather in the fasting cap: Ketone bodies are very energetic somehow and that pathway, in particular, can make the transition to alternate sources much easier. I used to get headaches while fasting, but not anymore.

2. Are AS symptoms active when there are klebs in the gut? Or are AS symptoms active when the kleb bacteria travels outside of the gut into blood steam, and the immune system responds? If the latter is true, is it theoretically possible to put AS into remission by not necessarily killing off all the klebs, but healing and repairing the gut lining so the klebs and other toxins cannot go through the gut lining into the bloodstream?

##This is a great question; very prescient! I wish I could offer answers as good--but these are complicated.
AS is triggered by the common gut bacterium Klebsiella. The problem with this germ is that it is highly adaptable: It can thrive anywhere in the body. SIBO is usually composed almost entirely of Klebsiella. The main mechanism in AS is starchy food feeding the Klebsiella lower in the digestive tract: Klebsiella [normally] reside in the lower gut, and resistant starches will cause this germ to "bloom" or procreate at geometric rates.
But You have nailed it! The more breaches in the gut lining there are, commensurally, there is greater proportional interaction between the germ and our immune system, generating more IgA. The contents of our gut alone can trigger IgA production, but if this is multiplied by leaky gut, the AS activity increases dramatically. So, a firm YES, for the most part, healing the gut will decrease AS activity considerably. For this reason, I eliminated NSAIDs completely, albeit after they had accelerated my AS, yet better late than never. So vitD, oils, and glutamine, lysine, colostrum, yoghurts, etc--things that will work to help heal the gut are all important. VitC, calcium, folic acid, and B12 also help but these 4 should not be taken concurrently with certain antibiotics. Glutamine with EVOO will help with energy, to some extent also the B12.

[TANGENT ALERT!] In fact, You have hit on a conundrum thus: At the earliest moments of AS, the only pain is due to inflammation and the only cause of this inflammation is the cascade caused locally by the immunoglobulin IgA specific to Klebsiella, acting upon the HLA B27 (or similar) cells in connective tissue close to their origin lymph ducts. Because of the proximity between the lower bowel and the sacrum and large hip joints, these become GROUND ZERO. Over time, AS progresses and the germ colonies spread. Eventually, the pain becomes a combination of inflammation and damage due to that inflammation and there are multiple sources of IgA because the Klebsiella colonies have spread and they trigger IgA production from anywhere in the body. All that said, I can try to assign a value to each contribution to overall AS: The sum of all the sources of IgA could add 30% while the gut source is still 70%. The sum of all causes of pain might be inflammation 50% and in extreme cases like my own, 50% from mechanical damage.

3. Plaquenil (Hydroxychloroquine): When you mentioned Plaquenil, were you suggesting it as a way to alter the gut microbiome, or did you mean to use it as a DMARD to suppress the immune system?

##No, I would not characterize Plaquenil as "immune-suppressing;" I would be more inclined to believe that it has some useful antibacterial properties. I began taking it just because I can: Right when the terrible dictator of my state (Nevada; Sisolak) made HCQ unavailable during the plandemic! I continue to use the drug because of its anti-malarial properties, but I doubt it is doing much for my AS! I AM CERTAIN that a better antibiotic to try in AS is tetracycline (it worked for me).

4. Lactose vs. Starch: I came across a claim suggesting lactose is 50% as potent as starch in feeding Klebsiella bacteria. Is there any truth to this? For example, would 10g of starch be equivalent to 5g of lactose in terms of feeding Klebsiella?

##I would not assign a number as an absolute, and I would be the first to observe that it is not always the FOOD, but often FOOD COMBINATIONS that determine how we will react. By way of example, a person with AS might not react to a baked potato alone, but following something fatty like a steak, it might take longer through the digestive tract and have the opportunity to putrefy/multiply our bad bacteria. So for many reasons, YES lactose can be as bad as a starch and hard (aged) cheeses are best because of lowered lactose content. But I learned this the hard way, thinking I was not eating STARCH but had too much mozzarella--string cheese--as a full meal! BIG disappointment and BIG FLARE!
5. In your last reply, you mentioned that sugar can directly feed the klebs. I’m a little confused, in your first reply you said that a sensitivity to sugar indicates SIBO, which causes inflammation.

##The problem with Klebsiella is the enzymes it produces--THEY contain the key sequence that alerts our immune system. These enzymes are produced in response to the presence of starches and are used to debranch the chains into simpler sugars ultimately into glucose. This germ would be just as happy to feed on sugar directly, but all sugars are absorbed by our bodies before foods reach our duodenum! Therefore, sugar cannot make it down our digestive processes far enough to feed the germ, which as I said before, resides in the lower intestine. NOW, if we consume sugar and there happens to be a colony along our alimentary tract early enough, the observation that not only will sugar trigger a flare, but that flare will begin much sooner than anticipated. I watch in particular for TIMING in S/R (Stimulus/Response) reactions and starches should take 3-8 hours to trigger a flare, but I hear people reacting within minutes and it certainly indicates something that I can only explain using a SIBO model. Ebringer might not agree and he would not agree with my next three suggestions: ANTIBIOTICS, ANTIBIOTICS, ANTIBIOTICS!!!!

-What does SIBO have to do with affecting AS, and the klebs?
-If sugar directly feeds the klebs, why are there so many posts on the forum about making and eating desserts? How and why does sugar feed the klebs, is there a certain scenario?
-When I said earlier that sugar affects my dad, I meant if he were to have soda, pastries, cakes, etc. We have never tried to take fruits out of his diet in the past. He eats a bowl of berries, a banana, an apple, and another bowl of random fruit everyday. From what you’ve seen, are sugary fruits generally safe as long as the starch content is low? Does fruits not have an affect on SIBO the way processed-sugar does? Do you think natural fruit juices without added sugar should be ok, like cranberry and tart cherry juice?

##I think that most dried fruits and juices are fine, but the only always safe fruits are pineapple, grapes, berries, melons, and lychee. Other fruits (specifically by harvest batch) should be tested per Carol Sinclair.

6. LSD/NSD and Rapid Pain Relief: We saw a quick reduction in pain after switching to the LSD/NSD diet. Do AS symptoms roar when there are a lot of klebs present, or is it when the klebs multiply/grow. Shouldn’t the majority of Klebsiella bacteria still be present, meaning the pain shouldn’t improve so quickly?

##It is a statistical thing and also working with multiple--rather, changing--thresholds: There is a certain amount of the bacterium that will not trigger enough IgA to cause a definitive flare, but there is a point that can be reached, and backed off from, quickly without much lingering effects. If you look at consuming average foods for a person with AS, think of eating starch like striking a large gong, and before the sounds completely mute, another starchy meal/another gong strike: Waves ring out constantly and it is hard to distinguish a flare (waves that reinforce) from normal (minor waves that sometimes cancel). A person doing the diet, however, can more easily "listen" to their body's reactions.

7. Current Diet: How does your current diet look now? Do you still stick to LSD/NSD most of the time? Did you fully achieve remission before reintroducing other food groups, or did you add them back gradually?

##For the previous decade or so, I have enjoyed a totally normal diet; unable to get myself back into the AS club--and not for lack of trying: Despite whatever I eat, my ESR remains below 10 typically. No more antibiotics and I do not react to ANYTHING. If AS "burns itself out," perhaps that is what happened. BUT, I no longer get kidney stones, iritis, plantar fasciitis etc and my terrible costochondritis, asthma, TMJ, etc all vanished. Personally, I believe it was just getting lucky trying to avoid a resistive strain by doing my cycles and inadvertently taking down my SIBO. I have not updated my story in my dropbox file, but now You know. I achieved full remission after about six years combination my AP for AS and NSD/LSD then I stopped antibiotics first for a couple of months with no problems and then reintroduced foods that formerly caused me the most trouble--like French fries. NOTHING.

Next steps for us:

I bought the Lactobacillus probiotics that you mentioned. I know that in terms of antibiotics and antimicrobials, you want to cycle between different types - so that a “super resistant strain of bacteria” isn’t created throughout the process.

8. Is it fine to keep taking the same probiotic strains for a long period of time, or should probiotics be cycled too?

##I think that probiotic strains should be handled with care: Substrates are usually very starchy and I like taking yoghurt in very small amounts. They should not need to be varied, but just taken as often as possible without causing a flare. The digestive system is very dynamic and these are transient strains that we are trying to "implant" and adopt as part of the mucosa; it will take many dosages.

Future Plans:

Will post another update in a couple of weeks.

The information on this site is incredible, and I’ve been writing down everything I’ve been learning. Maybe my many questions can be a help to others in the future!
##I'm sure that You will add a lot to the discussions, after getting some experience. We are each different and have different food complements available. HEALTH!